A brain tumour diagnosis is a life-altering event. We spoke to The Brain Tumour Charity to find out how the BRIAN app could help survivors, carers and doctors face its unique and complex challenges.
Uncertainty is one of the most challenging aspects of a brain tumour diagnosis. For the over 12,000 people diagnosed with a brain tumour in the UK each year, coping with a brain tumour can be an emotional rollercoaster.
Brain tumours are the biggest cancer killer of children, and adults under 40, and account for 85 per cent to 90 per cent of all primary central nervous system (CNS) tumours, with UK incidence rates projected to rise by six per cent between 2014 and 2035.
“Each person’s experience is different,” says Dr David Jenkinson, expert in oncology and chief scientific officer at The Brain Tumour Charity.
As the largest dedicated funder of research into brain tumours globally, the organisation developed BRIAN, an app that allows people affected by a brain tumour – as well as those supporting them – to record their brain tumour experience in one place and share information with their healthcare professionals.
Dr Jenkinson says that BRIAN was designed for more than just tracking symptoms. “We found out that each of community had different needs,” he explains. “Those personally affected by brain tumours wanted to understand more about their diagnostic, and what worked for other people. But equally, they wanted to share what worked for them.
“From a conditioning perspective, we found out that neurosurgeons didn’t have any sight of what happened to people after they’d left their care. They were seeing a snapshot of the patient every three to six months when they came in for their appointment, but without understanding what had happened to the patient in those months.
“We wanted to pull those experiences out and allow people to share their stories with others.”
BRIAN enables brain tumour survivors to add symptoms, seizures, treatments, side effects and appointments, but it also allows them to contribute to the app’s database, by sharing details of treatments and quality of life.
Its aim is to use the collective experiences of patients to drive forward research into brain tumours and accelerate progress towards a cure.
“We realised that there’s a lot of power in data,” says Dr Jenkinson. “However, it’s only powerful if it’s available to [researchers]. So, we surveyed our community to ask what their views on [data sharing] are and 96 per cent of them were happy to share their data.
“They realised it was unlikely to help them, but it could certainly help others and for that reason, around 95 per cent said they were willing to share personal identifiable information. For us, it was also important that people understand that breaches happen and understand that we, as developers, try our best to minimise that.”
Interestingly, the app was designed to help clinicians monitor patients outside their visits and alert them of the patient’s situation. “We knew that clinical nurse specialists and other health care professionals are exceptionally busy,” the chief scientific officer says. “So by using the app, we wanted to help them prevent unplanned admissions.”
The Brain Tumour Charity has a big Facebook community and Jenkinson says that creating a chat feature for BRIAN was a natural progression.
“Peer support is an amazingly powerful tool and allows people undo, learn from others, but also discover the app itself,” he adds. “The chat helps from both a technical and an emotional support point of view.”
But as the types of brain tumour vary, two people can use BRIAN differently. People with high grade brain tumours may only use certain features of the app compared with those a low grade brain tumour.
“That shows our patient-centred approach,” Dr Jenkinson adds.
The charity has recently started working with Health Data Research UK – the national institute for health data science – to share and make more data available through their gateway and is currently working on an assessment for holistic needs.
“We ran some surveys called the Improving Brain Tumour Care Surveys and we found that there is a real lack of holistic needs assessment,” says Jenkinson. “You may have finished your surgery, and chemotherapy, but no one’s really asking what issues you have.
“So, introducing a holistic needs assessment within the app would produce reports for the clinical nurse specialist that can better highlight an individual’s needs and ultimately, help us improve the quality of life of people living with a brain tumour.”
For more info, visit thebraintumourcharity.org.
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